[Anecdotes] Saving Sarah

Please consider becoming an organ donor.

Headlines have been made in the past few days regarding a 10-year old girl – Sarah Murnaghan – with cystic fibrosis who is in need of a lung transplant. Her parents have successfully sued the government to get her listed on both the adult lung transplant list as well as the children’s list (which includes kids up to age 12). Now, I know nothing about transplants other than what I learned during my medical school transplant elective with Dr. Devon John (he specializes in kidney transplants). But something seems a little suspicious to me when a judge can mandate one child can get an adult lung while other children – those whose parents may not have ready access to a lawyer – may be left out of the process.

I applaud Sarah’s parents for advocating for their child, as the transplant service UNOS has separate criteria for children and adults which may leave some children in the lurch. But now, a second family has sued to be added to the adult list. Does this now mean that there will be two de facto transplant lists: one for children without lawyers (and therefore stuck on the child-only list) and one for children whose families have the resources to have a lawyer (who can get them onto the adult list)? What is saving this one child results in countless others dying because they were skipped over in the allocation process?

From what I have read about the subject, the reason children under 12 have a separate list and allocation method is because of a lack of adequate data on the medical procedure. According to CBS News:

Dr. Stuart Sweet, director of the pediatric lung transplant program at Washington University School of Medicine in St. Louis, who helped draw up the pediatric lung allocation guidelines, said a prioritization system wasn’t set up for children younger than 12 because of a lack of data to set up proper statistical models, and an “apples-to-apples” comparison of relative illness between the two groups wasn’t possible.

Some data I found from a PubMed search (pediatric AND “lung transplant”)  regarding lung transplant in children revealed a study of nearly 1,000 children over the past 2 decades. The study reported that survival after lung transplant has improved dramatically in recent years and that there were no survival differences based on age.

Gender, age, diagnosis, prolonged ischemic time, and cytomegalovirus mismatch did not significantly affect overall patient or graft survival. Chronic preoperative steroid dependence (P = .02), preoperative ventilatory dependence (P < .001), and retransplantation (P = .02) were associated with decreased survival.

Another published study says that since the implementation of the lung allocation score, the characteristics of patients has changed but survival has not.

[C]haracteristics of recipients transplanted in the [lung allocation score] LAS era differed from those transplanted earlier. The proportion of candidates undergoing lung transplantation for chronic obstructive pulmonary disease decreased, while increasing for those with pulmonary fibrosis. In the LAS era, older, sicker and previously transplanted candidates underwent transplantation more frequently compared with the previous era. Despite these changes, when compared with the pre-LAS era, 1-year survival after lung transplantation did not significantly change after LAS inception.

Older and sicker patients are now getting relatvely more transplants. The lack of a change in survival after transplant might not be as negative as it appears on the surface. It might mean that the allocation process is working; sicker patients, who should be expected to have earlier mortality, remain alive just as long as healthier patients did in the era prior to the lung allocation score. Might the allocation system be working?

The critical policy question remains; should children under 12 years remain on a separate lung transplant list? Some common sense reasons such as lung-size-mismatch between adults and children suggest yes. But if age doesn’t adversely affect survival for transplants in children under 18, why the seemingly arbitrary cut off at age 12? That question is beyond my level of comprehension.

This policy question is best left to the clinical experts who – at the behest of a judge’s court order – will now be meeting Monday to review the lung transplant allocation process. I just worry that in the interim, children whose parents have the financial resources to sue the government might get expedited health care at the expense of poorer children equally in need of a life saving transplant.

Yet, if this episode results in more people becoming organ donors, many more lives could be saved beyond just one little girl.